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Monday, January 31, 2011

We are slowly working out a routine that gives Boo both the stimulation and the rest that he needs and sometimes allows me to get all the little household things done that pile up so quickly. Mornings are not Boo’s best time of day. He is groggy and easily upset by new things---a different physical therapist, an unexpected appointment, even deviled eggs with paprika on top. (Maybe I’d not made them that way before, who knows!) We have breakfast, Boo’s first round of medication for the day, morning prayers and then, if all goes well, Boo will “listen” to an audio book or TV. That is my time to get as many of my household chores completed as possible. You know, all those little things that have to be done and simply won’t do themselves---laundry, changing bed linens, preparing meals and snacks, paying bills, cleaning the bathroom. If Boo is upset or agitated, I read to him or try to interest him in the cat or bread baking, whatever comes to mind and works.

Afternoons Boo is usually ready for some exercise and stimulation. We take a short walk. He’s only up to a half to three quarters of a block right now. If it’s nice outside, we’ll listen to the birds or watch Boudreaux while Boo rests. Then, if he hasn’t done his physical therapy exercises in the morning, we do them then. Back inside, he has a half sandwich and a serving of fruit or a small salad and a breadstick and his third round of medication. Boo definitely naps between now and about five thirty.

In the evenings, I try to keep things VERY calm. We have a small supper and talk, play with Boudreaux, listen to an audio book or do something quiet together. No matter what else, I try to eliminate all unexpected or loud activities. Boo cannot adjust himself to change or noise easily at night.

Well, we’re back in the daily grind---nursing visits, occupational therapy visits, physical therapy visits, going for doctor visits, medication six times a day, small meals and snacks five times a day, laundry and other mundane household chores and organizing, always organizing. It seems like a treadmill with no end in sight sometimes. Still, with organization, routine and persistence---none of which come easily to me, I think we can have a great home life.

Last night I picked up A Mother’s Rule of Life, by Holly Pierlot. Admittedly Holly’s book is geared toward young mothers, but there were many wonderful ideas that I think I can incorporate into our life that will enrich and bless us. After reading parts of it to Boo, he asked to start the day with a decade of the rosary. Usually when we discuss things, I have to prod him to participate. This time he had quite a few ideas of his own. We came up with a tentative schedule. Let me stress that this is only a tentative schedule. Boo tires very easily and is still easily overwhelmed. So I must adapt to his needs---and right now they seem to change on a daily basis.

This morning we prayed a decade of the rosary, had omelets and whole wheat herb bread and Boo had a bath (still a major ordeal). Now, he’s resting and I’ve cleaned the kitchen, started lunch, cleaned the bathroom, started laundry and made the necessary phone calls for today. The only snag so far has been Boo’s apprehension about having a new physical therapist today. His last one moved. Everyone this home health agency has sent has been great. So, based on past experience this therapist will likely be good also. Unfortunately, logic doesn’t work so well when emotions are involved and Boo will likely need some more reassurance when he wakes.

This is an overdue post. Boo has been home about two and a half days now. Make that two and a half VERY busy days. He was discharged on Sunday. Monday morning his RN from the home health agency, Cathy, came and we went over all his medications. She set up PT and OT evaluations. We discussed safety issues, diet and basic care. This is certainly not the first time we’ve been through this process and yet I still have questions. She also helped us deal with a minor reaction to his medications.

Our daily life is moving very slowly right now. Everyday things are taking quite a toll on his strength. Just sitting up to eat breakfast today was an effort for him. He took a shower this afternoon and is now exhausted. I haven’t shaved him yet. All things in time, I guess.

Boudreaux is very protective of Boo. He believes his purpose in life is to supervise all aspects of Boo’s care. He watches Boo eat and “talks” to Boo if he gets distracted. During Boo’s shower today, Boudreaux eased himself into the far corner of the shower to watch. If I leave Boo too long---folding clothes, preparing a meal, getting myself dressed, the cat fusses at me and runs back to Boo. I never thought this cat would become so attached to Boo nor Boo to the cat.

Tomorrow is Boo’s first appointment with his family doctor since his hospitalization. I’ve prepared all I can for this excursion: discharge papers from the hospital, all medications, Boo’s daily log of blood pressure and glucose readings, a snack, a change of clothes, my list of questions, and his rolling walker. Before bed, I’ll get out tomorrow’s clothes. These ordinary outings just don't feel very ordinary anymore.

Although I was VERY uncertain about Boo’s stay in our small local hospital, I have been more than satisfied with his care. He is currently one of five patients. The Rns and CNAs have been very attentive and knowledgeable. Not only has each RN taken the time to briefly review Boo’s medical history with us (This has never happened anywhere else!), but they explain to me what drugs are being given, why, possible side effects, how the various drugs work AND when Boo is awake, they explain it to him. The staff has taken a similar approach when explaining diet and exercise. They’ve provided me with lots of written information, some good websites and referrals to community resources. I expected most of this information in a very condensed form as a part of Boo’s discharge instructions. Because they have given it to us all along, we can ask questions now and better prepare for Boo’s homecoming. I so wish other hospitals had taken this approach. I understand his care far better now than I ever have---and with 18 different medications taken at six different times, some with food, others not, coming up with an appropriate exercise program that he can tolerate and a diet that meets his dietary needs and is tasty, I want and need all the information I can get.

Yesterday morning, Boo’s blood pressure began steadily climbing. Given the road conditions, I didn’t feel comfortable waiting at home to see if it would come down with small medication changes. So, we made a trip to our local ER. I expected, and prepared for, a several hour visit to the ER until his BP was lowered. Boo’s body proved uncooperative and while his BP did begin coming down, its downward progress was SLOW. The ER and family doctors recommended that he be admitted---not because he was critical, but because of his history. Because he seemed stable, we elected to stay at our local hospital instead of being transferred to a larger hospital in a neighboring town. ( Of course, he’ll be transferred elsewhere if his condition worsens.)

Boo has never been admitted as a medical patient to this hospital. He has had extremely positive experiences in the ER and the physical therapy departments. Had I realized just how small the hospital was, I’d have wanted him transferred, no questions asked. And he would have missed the very best care he’s ever received in a hospital! Guess I need to rethink some of my preconceived notions…He was one of 19 adult patients and they were busier than usual. His RN was awesome. She not only took the most thorough medical history anyone has yet, she also took the time to talk to him and had the time to wait for him to talk to her. In the hospital Boo takes much longer than usual to communicate. I guess we’ll see how this goes…

Wednesday, January 12, 2011

One of Boo's almost daily struggles involves praying the rosary. After his stroke in December 2007, he asked me to pray the rosary with him occasionally. For someone who didn't grow up Catholic and who knows little about the rosary, it was a bit of a stretch. He always led it and I found it a very peaceful prayer. In August 2009, after his second stroke, Boo couldn't remember all the prayers alone. So, I downloaded instructions on how to pray the rosary and bought a rosary on CD. That was helpful and I came to treasure our prayers. Now, however, that is not enough.
Boo's attention span varies from day to day. Most days he simply cannot pray a whole rosary at once. We often pray a decade several times a day. This may be the wrong way to do it, but it is the only way I've found that enables him to still be able to include this prayer in his life on a daily basis.
The next issue developed around Thanksgiving this year. Boo became very upset that he couldn't remember the mystery all the way through the decade. We tried a number of different things, but nothing really seemed effective. Last week I stumbled across an old blog posting about praying with children. Some of the ideas seemed doable and not so childish as to be offensive. I showed Boo the blog post( http://ponderedinmyheart.typepad.com/pondered_in_my_heart/2009/04/praying-the-rosary-with-little-ones.html/ ) and he liked the idea of having a picture of the mystery that he could see and hold. So, I downloaded the cards, printed and laminated them This has been so helpful!
Actually holding and manipulating rosary beads has become an increasing problem. At first, I thought this was related to his attention span---and it is to an extent. In the morning, Boo can usually handle a large knotted cord decade rosary. That's really the only time any more. The rest of the time he'll hold the decade rosary, but won't attempt to manipulate it. Tonight he asked when I was going to make the roses for him like the children used in the blog, that he wants to have something to hold for each prayer. I thought that would be too childish, but he evidently didn't. I suppose I'll crochet 11 roses in the next few days and we'll try some more.

Tuesday, January 11, 2011

We've received just over six inches of beautiful, beautiful snow and a thin crust of ice.The picture of the church, I took yesterday as the snow was falling. Because we anticipated snow and ice and because my sister is away for a few days, Boo and I are with my mother. It's so much easier to keep tabs on Mom without having to get someone to stay with Boo while I run three blocks several times a day to make sure she's OK. Mom has actually been just fine. All I've really done that she couldn't was get her newspaper and take out the trash.
Boo misses going out in the snow. He must watch from inside and that has been difficult for him. He wants to go out and do all the things he used to do---shovel the walks and driveway, feed the birds, take out the trash. The ice presents a major safety issue for him. So, inside he stays.
Boo and Mom have kept each other company. While checking on Mom's cat this afternoon, I heard the two of them laughing in the den. Given Mom's normal propensity for jokes, I was NOT asking what was funny. I'm just grateful they enjoy being together.
Although I left Boudreaux at home, he does enjoy playing in the snow. The picture of him coming up the steps was taken yesterday afternoon before any ice. I went home to check on him (and the house) and let him out to play. I know cats are not supposed to like snow, but he seems to. He likes to run, kick up the snow and growl at it or lick it and shake his head. Yesterday I finally had to pick him up and make him come inside. Boudreaux is a strange little cat.
The last picture is Boo and Mom a couple of weeks ago at a restaurant. The two of them are dangerous together! There have been times when Boo has been discouraged or just very quiet. A little while around Mom and he's perked up---or maybe he's just wondering what kind of crazy family he's married into.

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About Me

We are Catholic Christians on a journey into the unknown world of life after stroke,
of learning to handle changing physical and mental abilities,
of finding creative ways to foster independence
and, most of all, loving God, each other and our family.